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Monday, 25 June 2012

The reason for this entry is to make people aware or reminder about will’s and insurances.

Sean didn’t have any life insurance when he died, obviously he couldn’t get any once he was diagnosed with Myeloma. he used to have a life insurance policy, but being a young chap he decided to cancel it, as he was paying money out for nothing, or so he thought at the time. It was a big regret of his, but hindsight is a wonderful thing!

So for the healthy ones out there if you haven’t got life insurance i would recommend you get some sort of cover, obviously if you have been diagnosed with Cancer you will be in the same boat as Sean was. But to give you an idea of cost at least in the UK a standard funeral is £3300, this is not cheap and it is not something you want to be struggling to find as you want to do the right thing for your loved one at the end!

There are a few thing you may need to sort out for when this day does come up, I know everyone skirts around this in some way, I know as me and Sean were very open about the end, but even Sean kept a few thing back and I wish he hadn’t as I may of been able to help? What I am talking about is the financial situation that terminally ill people have to deal with.

One being the loss of income when they finish work, but bills don’t stop coming in, so this only adds to the pressure for the one who is sick. They not only have to deal with this disease and try to get better, but they have to worry about finding money to pay bills. Personally I find the system in the UK disgusting they way no one is there to help, when you are first told about getting a terminal cancer. I know there are a lot of charities and that type of thing. But know one seems to help with the financial side of thing. In my mind once you are given this kind of news a personal financial expert should get in contact with you. To go through your financial situation, and get all the forms filled in so you can claim for what ever you are entitled to. and to make sure you are in the best financial health you can be, with no surprises at the end. The UK is meant to be one of the best places in the world to get help with health situations? That's my little rant over with!

The reason for it was that Sean was stuck financially no money coming in or very little, as Charito was out working with three jobs just keep them going. But it seems that this may not have been enough? As Sean had re-mortgaged the house to get some more money in, this is the bit I was totally unaware of! I had no idea he had dug such a big hole. I understand why he did it, to try and live! But this is why some financial help would have been nice.

So Charito is now left with a large mortgage (or maybe) with only a low income coming in.The reason I say maybe is that in the UK we have a thing called Probate, this normally only kicks in if there wasn’t a will made, fortunately Sean had done a will but he made a mistake in not putting Charito down on the mortgage, this means we have to go through probate with the government to ascertain who is the rightful person of Sean estate.

The word estates means all of Sean’s assets the big one is the house, these are then put against all Sean’s debts the big one being the mortgage. this is all calculated together and you are left with a figure of possible profit someone could have if they sold everything and then paid off all debts. If you have more than £300’000 you will then be hit for a inherency tax. Obviously Sean’s estate is nothing close to that, but you may need to check this on your own situation.

This process is something we could have done without as if Sean had Charito on the mortgage, the house payment would just have transferred to her, I am sure that the probate will go through without too much of a problem. It is a small fee, but without it the banks cannot talk to us about Sean’s property. Again if there was someone to explain this before hand it would of been nice! This now leaves us trying to get a large mortgage for Charito on a low income? I will do my damnedest to keep Charito in the house she shared with Sean, this is what he wanted!

Now to close this very long update, the thing I want you to take away is this.If you have insurance keep it.Get financial advice before it is too late.Discus with your loved ones any possible problems that may come to light after you have gone, forewarned is forearmed.

No one wants the end to come, but talking over your money worries with someone may lift a little burden that you don’t need right now. It may make you feel a little better for awhile and improve your quality of life. You don’t need money worries making you ill too.

If anyone in the UK needs help with Probate let me know and I will try and point you in the right direction, or anyone if you think I might be able to help, just ask if I don’t know I will tell you.

The service was very nice Charito was very brave and managed to say some lovely words, I tried my best to keep it a little cheerful. the reception afterwards was kept upbeat as we all remembered Sean, with little story's of things he did with his wicked sense of humour.

This was Charito with Sean’s Monkey, I didn’t know he had a cuddly toy, but apparently he used too sleep with it every night, as he couldn’t sleep without it. His grandchildren got it him some time ago, and with Sean’s normal sense of humour he named it SPANK!

A special mention has to go to Jodie and Chris his neighbours, as they both got a tattoo to remember Sean. he always said they were like another brother and sister to him.

Wednesday, 6 June 2012

Myself (Nigel) and Charito have been to the Liverpool hospital today, to say thank you to the Edwina the doctor who was treating Sean. Also to get the final blood figures that he had done on the Friday before he died. His Paraprotein’s were up from 23 to 28, so this was even after the increase of the Dexamethasone, and his Lenalidomide.

It seems that the Influenza A, that he recently had had taken the last of his reserves, so when he got the last infection, he simply didn’t have anything left to fight it with. The chimera test was 99% now so the transplant had nearly finished taking over, but unfortunately the Myeloma was just to aggressive to give this a chance to work properly, so it never really helped. He just couldn’t bounce back this time.

We have found out that Sean’s friends Paula & Adam are very poorly, Charito bumped it to Adam whilst at the hospital, I had never met Adam before but Sean spoke really highly of him, I think they had the same sense of humour. I didn’t speak to Adam myself as I have a bit of a cold, and the best thing for people with low immune system is to keep away from them, so sorry not to speak to you I wasn’t ignoring you. I have met Paula a few times in the past along with her husband Bernard at some of Sean’s appointments. Our thoughts are with you and we hope thing improve for you both.

Wednesday, 30 May 2012

Hi everyone it’s Nigel again with some updates, sorry for the delay but was awaiting the coroners decision before we could get going with the arrangements. They confirmed it was pneumonia that got him in the end. So that is why it was so sudden.

The funeral (why is there fun in that word?) will be on the 11th June at 15:00, held at the Blacon Crematorium, Blacon Avenue, Chester, CH1 5BB. this was the first available date due to the double bank holiday!

The ceremony will be fairly informal and we would like people to wear more brighter colours than the normal black, but if you want to wear that little black number that is fine as well we want to celebrate Sean’s life more than the end, and in keeping with his sense of humour as he didn’t want everyone to be dull and unhappy. As he said always look on the bright side of life!

There will be buffet afterword's at the Frog this is opposite the Countess of Chester Hospital. (well a little bit further past it). Everyone who want to attend may do so to both the ceremony and the food, there may even be enough fish finger sandwich's for every one, as long as you get there before us Tiernan’s as we can really pack this stuff in.

We would prefer donations to the Myeloma UK Charity than flowers, as Sean didn’t like flowers much, plus they don’t do too well at a cremation? If you do wish to send flower for the hearse you need to get them to the Co-operative, Funeralcare, 12 Lower Bridge Street, Chester, Cheshire, CH1 1RS. by 1pm on the day of the funeral.

Tuesday, 29 May 2012

This is to inform all of Sean’s friends and blog readers, that Sean pass away suddenly in the early hours of this morning 29th May @ 01:40.

On Sunday evening he had a bit of a high temperature, this carried on in to Monday, by the evening he felt very unwell and his daughter Amy, took him and Charito to the hospital. when he arrived he was too unwell to walk and they took him in on a wheel chair. the hospital gave him oxygen and took him to X-Ray, then put him in a bed at A&E, but shortly after that he collapsed the hospital staff managed to bring back round, but he wasn’t fully aware of his surroundings, half an hour later he passed away with no pain. At the moment we don’t know what actually happened to him and may never know, we are awaiting the coroners decision as if they want a most mortem or not?

Sean was always a positive person with a twisted sense of humour thrown in for good measure. he kept smiling and made me laugh with some of his blog entry's, we were both sure he would last a long time even with the dire situations he kept finding himself in. With hind sight Sean was probably a lot sicker than he thought, and just wanted to stay at home with his wife Charito, than go to hospital with a little bit of a high temperature. he has managed this in the past, as you will have read on some of his earlier blogs.

We would like to thank all the well wishers and friends he made over the years, and to all those who have this terrible disease to keep fighting, as Sean said in his last blog, everyone is different and some people make it. Stuff does work for a lucky few, so keep smiling and keep the faith, just hang in there.

A special mention some of the friends that Sean made with Myeloma, Paula, Adam and Antony.

Tuesday, 22 May 2012

I seemed to have done it again, sometimes I can write on my blog and have plenty of things to say and other days/weeks I forget or feel that there isn’t more worth while mentioning.

So far things are going ok and the last few days have been really good. It was Charito’s birthday on Saturday and we spend the day visiting garden centres and doing a bit of shopping for a few handbag. For some reason every woman needs a new handbag to match something else they haven’t bought yet, like a blouse or a pair of shoes that they will need to buy to match the handbag. So forever the circle goes!

The sun has been shining and made such a difference to the way I feel. I’ve also gone back to using my bright yellow Toyota Celica. Although the Citroen Xsara Picasso is a good car, for some reason I felt as though I was a disabled person on my last legs. (which may or may not be true). Driving around in the Celica makes me feel a lot better especially in the sun, although it is harder to get in and out of.

I’m not the type of person to give up and not to be positive, but I felt that the Picasso was doing that to me. When ever I parked up in a disable location and looked around at the other people, they were all driving similar vehicles, which just isn’t me.

I may get strange looks using the Celica as a disabled car, but at it makes me feel a bit better. Maybe I am different, always staying positive when I can. I obviously have my down days as we all do, but if it helps keep me going, then why not have a bit of fun.

I have a feeling that my platelets might be a bit low this week, I will have to wait to find out on Friday. I’ve had a few little cuts on my hand and they are taking a while to heal.

Nigel is coming over to stay for a couple of days (or at least one) so we are planning to try and get some photographs done, especially while the weather is good.

He hasn’t had any information regarding his DLI yet, but I think that will be done in the next few weeks as they aren’t going to be hanging around with it.

I always feel a bit guilty when I write about myself and what I am going through, compared to other blogs that I read, I have it relatively easy! (at the moment anyway). I know I whinge about my treatment not working and my paraprotein climbing all of the time, but at least I don’t have the liver and kidney problems that others have. I do have bone pain and nerve damage to my feet and hands, but I’d rather have that, than go through some of the treatment that my blog friends are going through!

From one myeloma patient to another, it is difficult to give encouragement as I’m sure we have all found, everyone is different. We all get treated differently the drugs work differently and our outcomes are different. So what do we do or say to stay positive. Well basically what everyone else is thinking, hang on in there and do what needs to be done, we don’t have much choice really.

Meeting up with others with the same or similar cancer can be encouraging, knowing what they have gone through, but it shouldn’t be taken as that’s how it is going to be for you.

When I speak to newly diagnosed patients, I try to avoid telling them that I have had several lots of treatment, all of which have have failed and two transplants that didn’t work. For them it may work first time and give them several year, we are all different, instead I try to stay positive for them and tell them how I got through the treatment without too much pain etc and hopefully encourage them to continue with their own treatment, without too much worry.

I personally get to have the same type of encouragement from others that have gone through similar treatments and been told they haven’t got much longer to live, only to prove them wrong by living several years more than expected and are still going. I’m going to be one of those.

So driving around in my yellow car makes me feel better, especially in the sun and if it helps towards getting some extra time on the earth with Charito, I don’t care what other people think.

Sunday, 13 May 2012

I was at the Hospital on Liverpool on Friday where I got the results of my latest paraprotein levels. Guess what! They have gone up again. They were 13 now they are 23. They will probably continue to rise.

There are a couple of things that we are going to do, we being the doctors and me. The first is to increase the steroids that I am on with the Lenalidomide, I’m not back on the three day pulse of 40mg, which is 20 tablets for three days at a time. They are hoping that this will stabilise the paraprotein as the combination of steroids and Lenalidomide is the way that they manage it’s effectiveness. I’m already on the full strength of Lenalidomide, so they have changed the Dexamethasone to see if that works.

The other things that we are going to do is a mini transplant or Donor Lymphocyte Infusion (DLI). A DLI involves extracting the white cells from my Donor (My brother Nigel in my case) and infusing them into me. Nigel will have to go on the same machine he did last time that extracted his bone marrow, but he wont need to have the injection he had last time as it will just be extracting the white cells.

Once the cell have been extracted they are infused into me, the same way as a blood transfusion or injected into me through my Hickman line. There is no stay in hospital as it will all be done on the the same day and there isn’t a need to stay in.

The plan is to do the DLI as soon as possible, for obvious reasons.

The increase in Dexamethasone will make me immunocompromised, more than I am now, and the DLI will also do the same.

There are risks with the DLI as there are with everything else. There is a 5% chance of death, which again compared with my chances if I don’t do is nothing to worry about. In very rare circumstances it can destroy the bone marrow all together (which again would lead to death). I will need to keep an eye on graft versus host disease (GVHD), I’ve not had a real problem with that so far, only with the dry skin that I use the double base for every day.

Hopefully this will work for a bit longer, at least longer than a few weeks, which seems to be the norm for me as everything I have tried has failed after a few weeks.

Going back to some other issues, the CMV doesn’t seem to be a problem as that has checked out OK from the slight anomaly I had a few weeks ago with both myself and Nigel being CMV negative, one of the results came back showing a slight CMV+. We don’t know why, but it isn’t showing now.

I’m still waiting on the Chimerism results to see if my DNA is the same as Nigels (i.e. the transplant has taken successfully) I’ve had a partial result back last time, which was 90%, so I expect that to be 100% this time. Although the transplant was/is successful, the effect on the myeloma wasn’t, hence the reason I’m on the Lenalidomide already, before the transplant process has completed. If I hadn’t started on the tablets, I would already be in a worse situation than I am now.

My blood results were OK on Friday as well.

HB 9.7PL 65WH 3.6Neuts 1.3

My Neutrophils are a bit low, but I expect them to climb back up again, I will find out on Wednesday.

I’ve also been in a quite a bit of pain with my back this week, although it has eased off a bit today, but I’m still not sleeping properly. I’m taking the sleeping tablets, but with the back pain and cramps that I have been having in my feet and legs, I’m not getting a chance to have a proper sleep. I doubt very much I will get any over the next few days with the amount of steroids I’m taking now. I will just have to see how it goes and if I can, catch up on some sleep during the day.

Thursday, 3 May 2012

Nigel my brother has been staying with me for few days. Its been great top spend time with him. We were going to go to tatton park to takeome photos but the weather wasn't good, in fact it was pouring down, so we decided to go further north into Liverpool where the rain wasn't expected until later on in the afternoon.&nbsp; While I was in Liverpool I popped into the hospital to get a chimiron test done. This is the test that tells them if my dna is the same as nigels! We can't do this test on a Friday, which is my usual appointment because it takes a few days to complete.

After the hospital we went into town to take some photos of Liverpool architecture.&nbsp; I have a few photos that I will post once I am home and have downloaded them from the camera.

By the end of the day though I was totally exhausted and no wonder if my bloods were low.
Feeling much better now though and looking forward to seeing my brother again soon and arranging to take some more photos hopefully the weather will be good so we can get to tatton park.

I've had my appointment at Chester yesterday. I have the start another chest infection and the doctor has prescribed some antibiotics to see if that will get rid of it. Although he did say it might not work and we may have to try something else, we will just have to see howit goes.

My bloods are also low so I'm hospital now having two units of blood.

I've also had a really good few days with my brother but I will write another post about that.

I found out yesterday that one of my friends that I kept in touch with via email has died.

I’d not heard from her for a number of weeks and she normally sends funny emails to keep us all amused and generally informs everyone how she is doing.

I’d not got a response from the email so Charito suggested having look at her Facebook page to see if she had posted anything. She doesn’t tend to keep her Facebook up to date but I took a look and discovered that there were lots of messages saying she will be sadly missed. It was quite upsetting.

Becky has been a guest blogger on here and you can read about her in her own words here (Greeting Everyone)

Sunday, 22 April 2012

The dex has kept me awake (again), I didn’t take any sleeping tablets last night as I was taking Charito to work in the morning and couldn’t risk still being sleepy at 7am and driving!

Decided to go to town after picking up Charito from work at 11am to look for a new pair of slippers. I tend to wear slippers more than shoes at the moment as I spend most of my time at home.

I found a nice pair of Jasper Conran slippers in Debenhams, but they didn’t have my size. I did intend on buying John Rocha but they didn’t have any. I like most of John Rocha designs in Clothing, I think most of my T-Shirts are Rocha. We ended up looking in various shops and we were going to have a look in Next but it has three flight of stairs. Yes I know they have a lift, but by the time I would have walked to the lift it would have been the same as walking up the stairs, so we gave that a miss. I couldn’t find any I really liked, so after grabbing a bite to eat we walked back to the car past Next again and I decided to tackle the stairs as I had had a rest (doesn’t that look funny with two hads’). I felt totally exhausted by the time I got to the top and need to rest for a while before looking around. I should have gone their first as they had a pair that both myself and Charito said at the same time ‘I like those ones’. So now I’m the proud owner of a new pair of slippers.

Friday, 20 April 2012

My bloods came back good again at Chester. I didn’t even have to wait long for the results to come back.

HB 9.0PL 103WH 4.8Neuts 3.8

So another good day with no real problems. They have changed the day that I go to Chester to a Wednesday as it falls inline with the Doctors clinic arrangements. The next appointment I have in Chester will be on Wednesday 2 May. I will be having my bloods taken as well as having my Pentamidine and I should be starting on my Zometa (Zoledronic acid) infusion. This is to strengthen my bones similar to the bonefoss I used to be on prior to the transplant. The bonefoss was in tablet form and Zometa will be infused through a drip and takes about 15 minutes. Some of the side effects are pain (although that should only be for a short while whilst starting) fatigue, flu like symptoms plus a few others that are rare. So basically similar to most drugs I’m taking! I will just have to wait and see what happens.

Wednesday, 18 April 2012

After last Fridays appointment at Liverpool I was expecting to get a phone call on Monday letting me know about the anomaly with my CMV showing positive, even though both myself and Nigel are negative.

I didn’t get the phone call so I was to assume that there was nothing to worry about. The Doctor told me that if he didn’t call then to go to Chester as normal on Thursday for my blood test.

So I was a bit surprised when I got the phone call yesterday evening from the Doctor. It wasn’t what I thought though! He told me that they hadn’t got the results from the CMV test as they didn’t take one on Friday … it takes a few days for the results to come back an he was checking the computer. The only time that I have had an issue with the CMV and it’s the only time they didn’t do a CMV test.

He said he wasn’t worried about it and to just ask them to do a CMV test the next time in Liverpool in a fortnights times. I’m not going to worry about the results at the moment as the Dr didn’t seem that bothered about it at the moment, I think it’s just something they want to keep an eye on. I will find out more about it the next time I’m there.

I took a chance at going to Starbucks again today, the last time I went I was sick, but I think that was just a coincidence.

I’m feeling a bit better day by day at the moment. I haven’t felt right, apart from the cancer, since I had the flu, it really took it out of me and I’m just getting back into blogging and catching up on emails and paperwork.

Hopefully I will feel a bit better day by day and get some kind of normality back before it gets worse again, which I know it eventually will. I must say though at the moment the Lenalidomide regime seems to be working really well for me …. maybe I shouldn’t have said that!

Sunday, 15 April 2012

After my hospital appointment in Liverpool we drove straight back to Chester and met up with my brother Nigel and spent the rest of the day and evening with him. I did the dirty thing and ate out at McDonalds, something I haven’t done for a very long time. Somehow it tasted really really nice, but only if I didn’t think about the people who where making it in the background and where their hands have been (eewwww).

We talk a walk around TK max and Charito came out with something for the kitchen as she usually does. She was concerned about the amount of walking I was doing, as I don’t normally do that much walking all in one day, both at the hospital and then around a few shops etc. I felt OK with not being on any of my tablets as I was due to start them the next day.

We left Nigel and his friend still shopping whilst we set off home and Nigel joined us later at our home. It was great to have him around and we had a good chat as usual. Again we did an unusual thing and order a pizza for tea, something that I haven’t had for a good few years, so the last few days I haven’t been eating healthy at all. This week it will be back on my veg and fruit and to be honest I much prefer the healthy diet than the junk food, even though it was convenient at the time. I didn’t want Charito in the the kitchen cooking all day. Charito has been busy all week decorating the bedroom, it’s still not finished as she has been taking her time over it as it’s the first time she has done any decorating – I’m doing my usual job of just supervising at the start and then leaving her too. She is doing a great job for beginner.

So the junk food aloud Charito have a bit of the rest whilst she is on holiday from the School and hopefully next week we can get out a bit if the weather is ok and enjoy the weather.

I think Charito was right though, I did walk too much and even though I had taken sleeping tablets in that night I woke up pain with cramp again. I tried the suggestion of bananas as well, but they didn’t seem to help even though I rubbed them all over my legs! (I didn’t really before I get any silly emails… I ate them).

Something else I begging to associate with the Lenalidomide…. In the past I damaged my nerves in my feet with the Velcade and Thalidomide causing neuropathy and I currently take Gabapentin to stop the pain, which works really well. However during the week of my Lenalidomide the circulation in my feet seems to improve and feet are generally warm, but as soon as I start a new cycle my feet are really icy cold, particularly at the end of the day when I go to bed. I can’t feel my feet they are so cold. I’ve started using a hot water bottle to try and warm them up. It is too hot to touch with my hands, but I can rest my feet on it without even feeling it. Something to keep in mind for anyone that might be starting a similar regime.

Charito and I went to Liverpool hospital together this week as she is off work during the school holidays, so we have been spending time together.

We were in an out of 10z outpatients very quickly as Gill was back off her holidays and there wasn’t a queue so everything was done and dusted and we were on a way downstairs with my bloods ready to hand them in and wait the hour for the results to come back before seeing the doctor. The usual receptionist must have been on holiday and the the relief one also as there was a new gentlemen trying to cope with all of the patients arriving and the que was all the way to the double dours about 4 meters away (13ft) but we finally got there in the end. Had my weight taken as usual and gave in my bloods to the nurse.

Heather was in the waiting area but we didn’t get to have a real chat as Charito and I went for a cup of tea and coffee in the restaurant whilst waiting. No soon as we got back that the doctor called us straight in which was unusual, normally I have to wait at least another half hour to an an hour.

Blood results still holding:

HB: 8.7PL 94WH 4.5Neuts 2.3

So they aren’t too bad, but this has been my week off from my Lenalidomide cycle, started again on Saturday.

Something new had come up this week with my CMV check.

I was told that the results from last week were showing a CMV results of CMV+ with a reading of 500 (not sure what the of what the 500 means yet)

Both myself and my sibling donor (Nigel) are CMV- so I was told it was unusual in itself. The doctor is calling me on Monday, depending on the results from this Fridays tests to see if I need to be back in to Liverpool for an appointment this coming week. If it as has got worse he wants to see me!

From the initial search that I have done there seems to conflicting or at least too much information to search through that will give me a difinitive answer.

CMV (Cytomegalovirus) is a common virus that most people have when they are younger and don’t even realise they have had it. It’s part of the herpes virus and spread through bodily fluid such as urine or saliva and spread when someone coughs or sneezes. It causes few symptoms and most people don’t even realise they have it.

In people like myself who have had a bone marrow transplant (SCT) it can lead to organ damage. What I would like to know is what is the process, which organs, probably liver and kidney and although I have been told it is 500 I have no idea if that is high or a low reading. They implied it was a really low reading and they just wanted to keep an eye on it. If anyone has got a good web site link to the reading and and possible outcome for a CMV+ change on two CMV- people then I would be appreciated it, it the meantime I will continue to try and dig something out and find out what the Doctor days tomorrow when he calls me.

Monday, 9 April 2012

I’m not one for celebrating Easter, either religiously or commercially. I think personally both a waste of time. Charito on the other hand is very religious and I wouldn’t take that away from her. So on the Friday I took her to town, where there was supposed be a silent walk from the Town Hall to the a local church, starting at 11am. After waiting for quite a while nobody seemed to have turned up so Charito went into the Chester Cathedral instead. I stayed in the car for a while and then noticed that people had started to turn up for the walk later than was advertised on their web site. I didn’t think it would be appropriate to try and ring Charito in the Cathedral so left her there whilst I would go for a coffee in Baristas, just at the moment an old work colleague text me as I had just used Instagram to take a photo of the cathedral and posted it on Twitter and he had seen it and was in Chester at the same time and asked if I wanted to go for a coffee. So we both met up and had a good chat. It’s been a while since I’ve actually caught up with anyone that didn’t have cancer as most of my time has been in hospital socialising with fellow patients, so I really enjoyed it. It wasn’t until afterwards that I realised that it must be a couple of years since I had seen him face to face although we had spoken over Google Talk in the past on our tablets, were both a bit geeky.

I hope to catch up again with him soon so that we can carry on our conversation and solve the worlds problems as most men do when they start chatting. It beats talking about shoes and bags or jewellery as the women do!

After the coffee I caught up with Charito, who was guess where …in Accessorize looking at shoes, bags and Jewellery!

I had my appointment on Wednesday and I was expecting to have to have a couple of units of blood on the Thursday; however even though my blood count last Friday was 8.2, it had now gone up to 9.3 which is good news. Dr Lee examined me and listened to my chest again and he said it sounded as though I had some fluid on my right lung, which is the side that I have been having the pain with. The last time I was examined they though I had pulled a muscle and since then one evening whilst lying in bed I felt a crunch which was painful on my right side of my chest as I lay on my left side. It felt as though a bone was clicking back in place or muscle was pushing it’s way out of my ribs. Either way it felt a lot better afterwards although still aching slightly.

So it did come as a bit of surprise when Dr Lee said it was a bit of a fluid sound. So he ordered me an X-Ray probably the quickest X-Ray I had ever had. I walked into the X-Room and plonked myself in front of the screen (done many times before) deep breath in, all done and out. I was there for a about 30 seconds I think! The results sent via computer to Dr Lee which he reviewed once he returned from having something to eat. He apologised for keeping me waiting, but I wasn’t too bothered as I was having my Pentamidine later on anyway.

The X-Ray showed something a bit abnormal from the last one I had. I was shown two X-Rays one from beginning of March and this new one. For some reason my right lung has adjust and raised a few inches higher than my left. He couldn’t give me a definitive answer as to why this has happened but and put it down to the fact that I must have damaged the muscles whilst I had the flue. They sent an electronic copy over to Liverpool so that they have a record as well, maybe they can shed some light on it.

I was hoping it would be a quick visit Chester, but I’d forgotten about the Pentamidine although that wasn’t really due until the Thursday and as they could get it ready for the Wednesday it made sense to get it all done on one day. So after arriving at 11am I was out of the hospital by about 3:30pm so it wasn’t really that bad compared to some of the other long days.

I have to last till Friday without needing blood and it will interesting to see how I have done lasting over three weeks without a top up. This is now my week off the Lenalidomide (Revlimid) after cycle three and start cycle four next Saturday. I’m hoping my bloods are finally setting down and platelets don’t get too low.

Saturday, 31 March 2012

No I’m not suggesting that you mix the two things! eewww. I had my fortnightly appointment at Liverpool hospital and had my blood taken as usual on 10z Outpatients. The wait to have my bloods taken, isn’t very long at all and I’m usually out within about 20mins and yesterday was no exception. It was good to catch up with a few of the patients I hadn’t seen for a while. One of them being my fellow patient from Chester, Heather who had just come out of hospital after having her Stem Cell Transplant. She was her usual jolly self and looked well, but I’d be the first to admit that looking OK doesn’t necessarily been you are doing well, but she did assure me that she was OK and it’s good to know that her son was helping her at home during her recovery process. Hopefully I will see her again next time I’m there if our appointments cross again.

After having my bloods taken I went downstairs for my appointment with the Dr and unfortunately as usual I had to wait over an hour and half before being called in. I have to wait for the blood results to come back and like yesterday, sometimes they take ages. I was getting really bored and fed up of waiting, when another fellow patient and I’d like think a friend now Adam turned up, although he did look pretty tired as he’s having to visit the hospital three times a week for treatment for his liver. He told me he was going to get something to eat and would be back later and sure enough about 10 minutes later he came back, but not empty handed, as a very welcomed surprise to me, he bought some cakes, one of them being a coconut macaroon. As mentioned I’d been waiting ages to be seen, the cake was very much appreciated as I was getting pretty hungry. We decided to go and sit outside the Dr’s room and wait to be called as he couldn’t miss us their when he came out to call any other patients.

Adam and I only had about 15 minutes to chat to each other and I wish I could have spent more time chatting, but I got called in to see the Dr (at least sitting outside the door worked!) When Adam is a bit better I’d like to meet up with him in Chester (he is from Chester as well) and go for coffee and a proper discussion. We talk about all sorts and we seem to be on the same wave length and discuss things from religion to how to cook prawns.

My discussion with the Dr was relatively short as well, we ran through my blood results, which are:

HB 8.2PL 53Wh 4.8

My Haemoglobin is a bit low and I would normally have blood if it gets below 8, but as I back in Chester on Wednesday to get my bloods checked again, we decided to leave it, rather than try and arrange form something over the weekend. My platelets have dropped again, and we are going to keep and eye on that as well. If need be I may have a rest in between this cycle and my next of Lenalidomide as that could be causing it to drop.

I’m not having any major problems or side effects at the moment, although sleeping at night is still and issue and last night when I did eventually fall asleep I woke up in agony with cramp in my leg again. So I’ve not had much sleep again after being woken up at 2:30am.

I’m just going to take it easy over the next few days and try not to overdo it and hopefully make it to Wednesday without being too exhausted.

Sunday, 25 March 2012

I’m feeling good again, I was only sick the once. I’m not sleeping again, but that might be because I have ran out of sleeping tablets, but it’s probably not worth taking them anyway even if I had them over the next couple of days, as I took my Dexamethasone (steroids) last night which always keep me awake. I’ve been up since 3:30am which came around sooner today as the clocks went forward; so it was actually equivalent to 2:30am.

The Dex always gives me a boost of energy and I don’t mind actually taking them. I’ve found the evening is best, if I take them in the morning, it just seems to send be a bit doolally (stupid, more than normal – is that a contradiction in terms) or I just start to cry for silly reasons, watch TV for example.

I’m going out to the shops again soon, maybe I’m a glutton for punishment! I wont over do it this time though (I hope!).

I must admit, it’s good to have finally got over the flu/chest infection. It’s taking a while for me to catch up on all of the things that I have been trying to do. I still haven’t sorted the things from the attic and put them on Ebay. I’m getting there though. Also still need to sell the Toyota Celica and catch up on emails and reading blogs. It all keeps me busy though and passes the time. I’m also going to try and get out and do some more photography as I haven’t done any shoots for ages. I can’t remember if I mentioned that I’m also doing a bit of programming again, this time for the iPhone/iPad. Yes I have finally given in and got myself a Mac. Obviously I’ve still got the PC, so my desk is a bit full with the Mac next to the PC which is next to the Android tablet. Now all I need is an iPhone and an iPad to test the apps on. So if you have any requests for applications that you think would be a good idea to have, let me know and I will put them down on my list of apps to have a go at.

Saturday, 24 March 2012

I had my bloods checked at Chester on Thursday and everything came back OK. In fact I was really pleased with my HB as it was 10.4, which surprised me as I was expecting it be low again. I wasn’t feeling tired, but I’ve had to had blood in the past as it was getting low even though I was feeling relatively OK. The Dr examined my chest and gave me the all clear and said the pain I was feeling on my right side of my rib cage was probably a muscle related and to just keep taking the pain killers and see how I feel in a few more days.

So over the last couple of days I’ve been feeling really good with my energy levels being high. The good weather we’ve had has also contributed to feeling better, as I’m sure it does with everyone, a bit of sun makes us all feel good.

Yesterday, after picking Charito up from work at about 2:30 we had to pop into the post office and as it was a nice day and I was feeling good, we (OK I) decided that we should go into town and have a look around some shops. It’s been ages since I walked around town, several months in fact, so although it was tiring, I enjoyed the afternoon. We popped into Starbucks for a coffee and a cake, which is where I think things started to go wrong!

By the time we got home I was a bit exhausted and was out of breath talking to my brother on the phone but I just put that down to fact that I just put a light bulb up in the kitchen (maybe I shouldn’t have done that either).

We a had a curry for our evening meal, homemade, not from a take away, we normally have one a week. I couldn’t finish mine though as I wasn’t feeling too good. By the time I took my tablets at about 7pm I was feeling even worse. I decided to go upstairs for a lie down, but never got to bed because by the time I got to the top of the stairs I had to up-chuck (puke, sick, vomit, whatever you want to call it). So the tablets I’d just taken came back up. For those that are used to being sick, e.g. anyone who has had to go through a stem cell transplant will know that you get used to when you have fully up-chucked everything in your stomach. This was one of those times when I knew it wasn’t everything. I think the curry just didn’t want’ to come up, which is a good thing sort of, but for the rest of the night I still felt ill as though I was going to be sick again and my temp had started to climb. I don’t know why I am writing this as though it is in the past, as it’s now 5:45am and I’ve been up most of the night, if not all of it. I just can’t sleep.

I’m going to try and get some sleep during the day and hopefully feel a bit better later on.

Wednesday, 21 March 2012

Once again it has been a while since I have blogged. I’m feeling a lot better now than I was before. The only lingering thing I have now is some pain in my right ribs. I’m not sure if I have bruised my side through the amount of coughing I have done over the last four weeks or it is the start of my myeloma taking effect on my bones. I must get it checked out next time at at the hospital, if it is still hurting. I can’t lie on my right side at the moment because of the pain and it starts me off coughing again.

Appointments

My appointments have changed now for the hospitals. I used to go to Liverpool every Friday and Chester every Tuesday. That has now changed so that I go once a fortnight to Liverpool, still on a Friday and once a fortnight to Chester, but now on a Thursday. So this week (Thursday) at Chester and next week to Liverpool on Friday and so on. I’m not quite sure what will happen if they take my bloods at Liverpool and find out that I need a transfusion, probably the same as we did last time; Arrange to have it at Chester. But that means a group and save on the Monday and then transfusion on the Tuesday. Do I go back again on the Thursday? Who knows, I will just have to wait and see. It will be ok at Chester if they discover I need blood on the Thursday as I will just go back again on the Friday for the transfusion. Hopefully though that shouldn’t happen too often and I wont need any transfusion.

Paraprotein

I’ve had my paraprotein checked again and the good news is that it seems to have plateaued at the 13 mark. Last time was 12.9 and this time it is 13, which I’m happy with. As long as it doesn’t go up, that is good news.

The difference between dogs and horses!

I’m sure if you live in the UK then you are familiar with the laws regarding dogs fouling public walkways etc and used to seeing the red boxes for disposing of dog muck. If you don’t collect the dog muck that your hound has decided to excrete, then the owner faces a possible fine! However I’m not familiar with such a law for horses! The reason I mention this is that over a week ago a horse (along with it’s owner) has obviously been trekking along the public footpath near me and decided to dump it’s load right in the middle of the pavement where it has continued to stay for the last week. Now keep in mind the size of a dog compared to the size of a horse! Now this footpath is used by families with pushchairs and parents take their children to school along this route sometimes with their small children riding their bikes. The horse muck takes up most of the footpath and nobody has taken responsibility for clearing it up. There isn’t another footpath that people can cross over too, they have to avoid it by going onto the road. Maybe I should put a bit sign in it asking for the owner of the horse to please clear the mess away. Perhaps all horse riders should carry a back-pack with a shovel (poop scoop) and large pink bag to shovel the mess up and carry it away with them, just like dog owners have too!

Tuesday, 6 March 2012

I can tell people are starting to get a little worried that I haven't written on my blog for a while or responded to emails and facebook messages, so thought it was about time I give you a quick update.

As I previously blogged I have had the flu and it has really taken it out of me. I've spent most of the last three weeks trying to recover from it. I'm still trying now. I still have an infection of some kind on my chest and I was expecting to be kept in hospital today on my weekly visit to Chester. My temperature has been going up and down over the last few days going over the 38 where I suppose to go into hospital, well at least thats what I used to have to do, hence the reason why I thought I would be kept in hospital today. I was anticipating them taking me in so much that I had already packed a bag and had it ready in the car! Fortunately I they didn't keep me in, I really hate staying in hospital. I can't think of anyone or why anyone would enjoy it, not the most exciting places to spend your time.

Rather than a stay in hospital, I got examined by the doctor, who seemed competent and friendly and he prescribed me some more antibiotics and sent me for another xray. I say another xray as I had one two weeks ago at Liverpool, but as the systems aren't connected I had to have another one. I didn't have to wait around for the results though. I'm back in again tomorrow for my monthy pentamidine, so I'm sure they will have a word with me then if there is a problem.

So I'm back home again still coughing up yucky stuff and don't get much sleep, even though I'm taking sleeping tablets to help me get some rest. It just seems like it is taking an age to get rid of it. It's been one thing after another for the last three weeks. The Graft V Host Desease (GVHD) has got a bit worse but manageble with my skin drying up all over my body but mainly on my knees this time. I keep leaving bits of me wherever I go, so don't invite me around unless you want me to leave a little bit of me behind!

This is the first time I have managed to write anything on the computer for ages, actually that's a lie! I'm actually in bed writing this on my tablet (hence all the spelling mistakes as it doesn't check like the computer does).

At least you got an update. .. Now I'm going to try and get some sleep. To sleep properly I have to sleep sitting up because as soon as I lie down I start coughing. .... Oh well I will give it another try and hopefull this lot of antibiotics I have will finally clear it up over the next seven days.

Friday, 24 February 2012

I’ve had my usual Friday visit to Liverpool hospital today and I was told that the results of one of the viral checks had come back positive for Influenza A.

No wonder I haven’t been feeling very well over the last few weeks! I’m still coughing through the night and they have given me some medicine that I have to breath in like a Ventolin for Asthma to take twice a day. Hopefully that will help clear it up quicker.

Another problem that I have is more Graft V Host Disease. I mentioned the rash on my last post, well even though I put my double base cream on this morning before going to the hospital, by the time I got to see them, my skin had dried up and the rash was clearly visible. By the time I got home my skin was flaking all over the place. I smothered myself in the cream again and I have some Eumovate steroid cream for the worst areas, which is my arms at the moment. Normally I would have 40mg of steroids tomorrow as part of my Lenalidomide regime, but they have suggested I take 10mg over four days to see if that helps with the GVHD.

So I’m not having a good time at the moment, I could do with a few weeks of at least feeling OK. It seems that I get some good news and then something else happens. I keep having to remind myself that it can’t last forever, it will eventually go and and then I might get some kind of normality back.

Thursday, 23 February 2012

OK, it might not be that difficult, but I always get stuck when I have to think of a title for these posts. I’m not that creative with my writing skill to come up with snappy tag lines and if I was writing them for SEO (Search Engine Optimisation) then I would probably think a lot more about them. I think I spend more time thinking about the title than I do about writing the post!

I’ve not posted for a few days, so thought I should at least write something, in case you thought I had died! incidentally when I do die, I wont leave you guessing, I have put things in place so that my brother Nigel has access to my blog and will let everyone know. So no need to worry if I have popped my clogs if I don’t post for a while, I’m NDY!

On a more cheery note, my bloods from last Tuesday were good again.

HB 9.2PLTS 104Neuts 5

They didn’t do a U & E blood test, so I can’t tell you my kidney results. I should get those tomorrow though at Liverpool. I’ve finished my course of antibiotics, but I still keep coughing! I will get the Dr to check me over tomorrow. Hopefully it wont result in a stay in hospital.

Thanks to all the people that are emailing me saying that they are following my blog. It’s good to know that we can help each other. I will get around to emailing you all, but just not been fully 100% this week, so still trying to catch up on things.

Saturday, 18 February 2012

I started off with a bit of a chest infection and asked for some antibiotics at Chester hospital. Now call me a bit cynical, but there is a new doctor at Chester and to be honest I think it is going to be a while before I trust him like I do the others. Maybe its because he is new, but I think it’s more likely because he didn’t even exam me, normally if I have a problem with my chest, they would take listen to make sure it is clear before giving me their opinion. This guy just said no I’m not giving you anything, but if you have a high temperature, make sure you come back in. Great I thought you want me to have the possibility of getting pneumonia and then dying before I start to get treated! Anyway I couldn’t force him to give me anything, so I went away still coughing. I knew that I was going to Liverpool on Friday where I would probably get a prescription after a thorough examination, even though Dr Salim my main Dr was on holiday. Oddly enough I was seeing another new Dr. The reason being is that they all change around about the same time. This one though spent his time with me and went through the history that he wasn’t sure of and then examined me and even went to get a second opinion on a rash that I have as well. I was given some antibiotics as well as some topical steroid cream if the rash doesn’t clear up after using antihistamine. It was totally different. And he wasn’t just doing this because of what happened in Chester as I never mentioned it.

Now you know how lucky I am …. mmm ok maybe not and this was one of those times again. When I got home, my temperature started to rise. slowly but surely it went up over 38c. So I put the fan on to cool myself down as well as took my tablets which included Paracetamol which reduces your temp. By this time I was in bed with no covers on my with the fan blowing and constantly coughing. So do I ring the ward and go into hospital, if so, where do I call, Chester or Liverpool (something I need to ask) it did go down below 38, but took a while after peeking at 38.7. I knew if I called the hospital I would have to go through the rigmarole of going to A&E then AMU before finally getting on the ward, at least that’s what would happen in Chester. I don’t know about Liverpool, as I’ve never gone straight onto the ward from home. Then once I was on the ward I would be put on antibiotics intravenously and would end up staying for a week or two. The other option was to stick it out over night to see if my temperature goes down. Guess which one I chose .. yep stick it out. Sure enough even though I didn’t get much sleep if any with coughing and spitting most of the night, having trying to sleep whilst sitting up as every time a lay down I got worse, my temperature did go down. I’ve not had a temperature today and it has been normal at 36.6c so hopefully I’ve avoided the hospital stay.

I’m still coughing but hopefully the antibiotics have started to work and my temp wont go up again; I’m keeping a close eye on it and checking it regularly.

I’m not the only one who has had this Chest infection (or the only one who had the Chester experience either with the same Doctor). There have been a number of patients at Liverpool who have got it as we all sit together near each other on the day ward. In fact Gill was doing a good job of isolating us all as she managed to take our bloods on Friday. Trying not to let others catch it. Hopefully by next Friday I should be clear and the other will be feeling better as well.

Friday, 10 February 2012

Yes that is a 12.9 for my paraprotein. The chart shows the progress since the 1/07/2010 at 17.8. 12.9 is the lowest it has been. I’ve only has one cycle of the Lenalidomide since my transplant. Can I say for definite that it is the Lenalidomide, no as it might be the other things that I am taking that is making a difference, but there again it might be combination of the two. To be honest I don’t care which it is as long as it is working.

I start my second cycle tomorrow, I’ve been given all of the tablets today, but I don’t want to start taking the dexamethasone tonight, so I will start tomorrow on cycle 2 (officially cycle three including the one I had prior to transplant).

Sunday, 5 February 2012

Since finishing my first cycle of Lenodlidomide (Revlimid) on Friday, I’ve been feeling more and more exhausted, I’m not sure why though. Maybe it’s just because I have been doing more than usual lately, with sorting out the things from the attic and trying to do a general tidy up.

I’ve had my brother come over and visit it me with his son on Saturday, which was really nice. I haven’t seen them both for a very long time. We spent most of the time talking and having a general laugh, but by the time we had, had something to eat, I was ready to just fall asleep in my food. I could hardly keep my eyes open. I felt guilty as they had travelled to see me and felt as though I couldn’t stay awake long enough for them. I know they understood though. They needed to travel across the country though to get back home and Saturday was the worst day to do it with the snow falling! I was really lucky that they made it over in the first place as they weren’t sure if it was going to snow on the way here. They had been told it was snowing where they lived, so setting off early to get home wasn’t a real issue anyway and it was safer for them to do that than wait around for me to wake up and have a bit of energy. I got a message on my phone later that evening to say they had arrived home safely and managed to avoid most of the major road problems caused by the snow.

Today (Sunday) I’ve again felt tired most of the day and struggled getting up and down the stairs. My legs seem very week and I’ve even been using a stick to help me get up and down, when I say stick, I mean a monopod for my camera as I don’t have a proper stick. It’s been the first time as though I have needed anything to help me with my walking etc and it feels as though I have been defeated in some way. I’ve been thinking about buying a stick for when I go out, but again it feels as though I am giving in to the cancer if I need a stick to assist me or rather to make sure I don’t fall over because I haven’t got the overall strength to get up and and about. Maybe I shouldn’t be so vein and just get one, it is better to be safe than risk falling over and maybe breaking some bones etc.

I am hoping though that it is just a passing phase and that my energy levels will pick back up again.

Friday, 3 February 2012

Another busy day today. I’ve had my car in to be fixed and serviced and so in courtesy car at the moment why jobs are being done on it. Having to have quite a bit done to bring it up to a safe standard. I’ve only just bough it second hand, but as usual as soon as you buy something it goes wrong. A few days after buying it the engine warning light light came on. I’ve been waiting to get it connected up to the computer and see what it was that was causing it, still not sure now, but will find out tomorrow exactly what it was. I know I need two new tyres and discs and Chris next door notices that my near side rear light casing was holding on by a thread, so I also need that doing. Brake pads have needed changing as well as some other small jobs. So in all in all it is going to be few hundred pounds that I could do without having to fork out for. Let hope lots of people bid on my dark matter I found

After dropping the car and Charito off this morning I drove over to Liverpool, parked up and took the small walk across the road to the hospital. I realised though that when I parked up that I didn’t have my man-bag with me that I usually carry my notepad and things in. I’m still not sure where it is, but I think I left it in the back of my own car. I called the garage to see if I left it in the office, but they hadn’t seen it, so hopefully it is still in the car somewhere.

It was good to find when I got to the outpatients that Gill the regular nurse who looks after the patients was back sorting out everything. It was a real nightmare when she was away. I understand that the other nurses weren’t able to put in 100% to us on the outpatients while they were looking after their own patients on the ward as well as trying to take care of us, but perhaps they should realise how much work Gill does and how good she is at her job. She was really missed by us regulars and could definitely see the difference.

Gill does a wonderful job of organising things and wont stop until we have all been looked after, sometimes, in fact most of the time being left on her own without getting a drink or a break for many hours as she constantly whips from from room to room organising Pentamadine or setting up bloods, cleaning dressing, podding results, etc, etc the list goes on. She needs help and assistance, so if anyone is reading this from the ward, don’t forget about Gill in outpatients, just because she is on her own, doesn’t mean she should be. Let get the new rooms sorted that we have all been looking forward to seeing that we have been promised and make it into something special, just like Gill.

Well after Gill had looked after me and I had a list of jobs for her to do… FBC, Full Profile, Paraprotein, Cross Match, Chimerism and dressing replaced with new statlock I was off back down from the 10th floor to the ground again to wait for my results. I did the normal thing of Checking in at the desk, getting weighed and then nip back out again to the cafe just outside (the room that is not the building) to have a coffee and a cake to pass the normal hour at least while the blood waiting for the blood results. There were a few familiar faces around, but none of the ones I usually chat too, Adam was on the ward, he may be home for the weekend (hopefully) and Paula was I think on the ward as well, unless she had managed to go home, which I’m pretty sure she would have done as she seems to be doing really well at the moment. After having my drink I went back in an Pete, one of the younger patients, well a lot younger than me, ok a lot lot lot younger than me was there, so I had a chat to him, but as he didn’t need to wait for the results he nipped in before I did.

It eventually came my turn to go and see Dr Salim and although I had left my bag somewhere with my notebook in I think I managed to cover everything I normally would. I wont get the results from the Chimerism for about a couple of weeks, this will show me how much of my DNA has turned into Nigels DNA and how well the graft has gone. I’m going to have my T-Cells checked next week to check my Immune system, which is part of the same process, so that will be another test I’m looking forward to getting the results from, hopefully they will be good, they do expect them to be really low at the moment though which is normal at this stage (I have a sneaky feeling though that I might surprise them!). The paraprotein levels I wont know until next week, so a bit of waiting game with that one. I’m eager to see the results of that one as it is the main one I like to go by for obvious reasons, too much of this and I die quicker, but I’m hoping that it has lowered or at the very least holding an not pouring into my blood stream, I’m not up to dying just yet, I still haven’t sorted out all the things from the attic

My main blood results came back while I was there and yet again they are really good and I don’t need anything doing.

HB: 9.5Platelets:47WBC:4.6Neutrophils: 3.4 the highest they have been for ages, in fact I can’t remember when they were last that high!

I even had some more good news, Dr Salim was suggesting that after next weeks visit I may only have to go to the hospital once a week and after that even fortnightly. That would make such a difference to my life not having to attend the hospital most days and to cut out all of the travelling and expense that I have incurred going backwards and forward to the hospital in Liverpool. Let hope everything holds up and they go as well as they are doing. I feel as though things are finally going my way and that with the vitamins and new drugs I’m on as well as trying to manage my diet is having a seriously positive effect on the Myeloma and it’s something that I personally can influence, rather than just taking tablets that some pharmaceutical company has recommended that I take or try.

The temperature outside is dropping and I hope it doesn’t snow. My brother Nigel was supposed to be travelling over to see me tomorrow with his son, but it might be safer to cancel that if it snows as they may get stuck or just spend the whole day waiting in traffic.

I will let you know any further development on all things as soon as I do. Keep warm in this cold weather wherever you are in the world.

Tuesday, 31 January 2012

I attended Chester hospital today to get my bloods checked and the results have come back good again.

HB: 9.9Platelets: 41Neuts: 2.4Creatinine: 75Urea: 11

I need to keep up the drinking of fluids as usual, but again I’m really pleased with the results and I’m actually feeling really good at the moment. So far the combination of Dexamethasone, Lenalidomide and the alternative remedies that I am adding slowly seem to be making a difference and I’m actually looking forward to finding out how my paraprotein is doing on the next test on Friday.

Monday, 30 January 2012

As you are aware that over the last few weeks I have been having a clear out of my Attic. During this process I have been looking at various alternative methods of therapy for my Myeloma Cancer and trying different things.

Sometime you come across the unusual and and I’m a bit sceptical about anything new until I have tried it myself and done quite a bit of research into the benefits and properties they hold.

My latest discovery is what is called Dark Matter, which has several other names including ‘Space and Time’ and ‘The Nothingness’, ‘missing mass problem’

Lots of research has been done into this and Einstein and other like Kepler were leaders in the fields, although at the time didn’t realise the significance in the cancer healing properties.

Dynamical studies of the Universe began in the late 1950's. This meant that instead of just looking and classifying galaxies, astronomers began to study their internal motions (rotation for disk galaxies) and their interactions with each other, as in clusters. The question was soon developed of whether we were observing the mass or the light in the Universe. Most of what we see in galaxies is starlight. So clearly, the brighter the galaxy, the more stars, therefore the more massive the galaxy. By the early 1960's, there were indications that this was not always true, called the missing mass problem.

The first indications that there is a significant fraction of missing matter in the Universe was from studies of the rotation of our own Galaxy, the Milky Way. The orbital period of the Sun around the Galaxy gives us a mean mass for the amount of material inside the Sun's orbit. But, a detailed plot of the orbital speed of the Galaxy as a function of radius reveals the distribution of mass within the Galaxy. The simplest type of rotation is wheel rotation shown below.

Rotation following Kepler's 3rd law is shown above as planet-like or differential rotation. Notice that the orbital speeds falls off as you go to greater radii within the Galaxy. This is called a Keplerian rotation curve.

It is based upon this missing mass problem that I based my research.

So where is this missing mass?

After emptying the attic in the far corner I discovered under some old timbers a form of dark matter that was significantly darker than the blackness of the attic with the the lights completely out. I realised that I had come across some of the dark mark matter that has been missing.

As I am having a complete clear out, I though I would bottle some of this and sell it on ebay. It has some great healing properties, called ‘Time’ and can be used in various ways, either applying a small dose to the affected area and leaving overnight, or as long as you wish, or internally taking small sips as often as you like as long as it is taken in a completely darkened room.

I could have done with discovering this earlier and maybe used the missing time to do something more significant over the last couple of years, rather than having treatment that hasn’t worked. Although I had no choice really; and until I discover and bottle the illusive Hindsight we all need to make decisions that affect our future and the ‘Time’ that we have left.

Saturday, 28 January 2012

Although this is my first cycle of Revlimid after the transplant, because I was on it for about three weeks prior to transplant, they are calling this cycle 2.

Yesterday was day 15 of the 21 day cycle. Up until yesterday, I have had low platelet counts and required blood. From the blood test I had done yesterday though, it looks as though it is holding. Well least my bloods are anyway. I came out of the appointment feeling a bit more positive.

My HB was 9.9 and platelets 29, which is good for me and I don’t need anything over the weekend. I really thought I was going to have to go back in again today (Saturday) to have a top up of either blood or platelets. More good news is that my Creatinine level is within the normal range, it hasn’t been there for a very long time, if at all!

So what is it that is making a difference now, well I’m not 100% convinced it is just the Dexamethasone and Lenalidomide that is making a difference. I think I mentioned I was looking at the healthy options of treating Myeloma and in the past I’ve told you about the Sessamin, well I’ve started taking that on a regular basis as well

I will be posting more about my findings and what I’m taking, but it looks quite promising what I have found out. As a quick overview this is what I am taking so far, but this might change as I do more and more research into the different vitamins, herbs and minerals.

These are the things I’m taking regularly now, I have lots of other things as well that I’m dabbling with and I will let you know if they make difference. I’ve bought various different products so that I can try out the Raw whole grain cerial. – I’ve got a document that you can have look at with all of the various wheat's etc.

The first time I made this though it came out far too thick, so I need to change a few things to get it right. Also need to make it a bit more exciting to eat as it was like chewing on plain flower. I’ve got some other products to add to it so once I have got something that works and tastes ok, I will give you an update.

Even more good news yesterday, do you remember I enquired about the CD44 Protein. Dr Robert Orlowski’s lab had shown …

… in earlier research that a protein CD44 plays a role in interfering with the drug, and its presence usually indicates a poor outlook for the patient.

Well my results came back and I don’t have it, so at least one less thing I need to worry about.

Talking about Dr Robert Orlowski, I was speaking to Dr Salim about the DCA and the myeloma patient that Dr Orlowski has who is trying out the DCA, and he was enquiring if I had heard anything yet. I’d already sent a message to Robert asking if he had an update as he asked to me get in touch in a few weeks to find out how he was doing. I realise he is a very busy person and probably wouldn’t get around to replying to me for a while, but strangely enough, later on that day he did.

At 1st visit after DCA therapy he had a decrease in the M-protein. It will be interesting to see what happens at next visit.

I will continue to monitor what is happening with the patient and give the DCA a go if it seems to be effective in the treatment of Myeloma.

So I continue to have quite a few options open to me at the moment, so as always staying positive and looking on the bright side…. Talking of which…

Always look on the bright side of life. … I’m still waiting for all of your video clips to arrive so that I can create my little montage. I have received a few videos through, but not as many as I as hoping, please help me out or it will be a very small montage!

Wednesday, 25 January 2012

James my youngest son came to help me sort all of the things out in the attic over the last few days.

He arrived late Sunday and we spent Monday bringing everything down from the attic. We then started to label item with green and red stickers, green things we are to keep and red things I’m going to sell on eBay. I didn’t need a third sticker, contrary to James’ idea to throw things away, as we were going to throw them away anyway, what would be the point of putting a sticker on them!

We didn’t get a chance to label them all up on the Monday and the plan was that on the Tuesday would be.

Go to Liverpool for my appointment. I would need

- Bloods taken (about an hour once sorted with other patients)

- Platelets (already ordered so should only taken 30 minutes)

- Pentamidine (takes about 30 minutes as well)

no clinic or seeing doctors so should get home early.

Arrive at Liverpool at about 9:45 to 10:15am and expected to be out at the very latest by 12:30 ish to 1pm.

Then once we get back home have something to eat and finish off labelling all the attic bits and bobs and then take any rubbish bits to the tip/recycling on the way out to pick Charito up.

James wanted to learn how to cook the Spaghetti Bolognese that Charito makes (or at least have another update as he forgot how to do it the last time she taught him)

So once we got home the plan was he was going to cook as Charito helped him and then I would take him to the train station to go home after we had eaten.

However the best laid plans never work out….

I arrived at the hospital as planned 10am. Gill was on holiday and boy did we miss her. The Unit staff had to cover the day ward as well as look after their patients on the ward. You can definitely tell when Gill is off. Now normally everything would have been sorted and Gill would be her very efficient self and have everything and everybody scheduled in and it would work like clock work (most of the time).

to cut a very long story short, I ended up having four different nurses manage me and got out of the the hospital at 3pm only to have to travel over to Chester to have another cross match done for some bloods today (Wednesday). By the time I’d finished at all of the hospitals it was nearly time to pick Charito up from work, so James and I hung around a bit and then picked her up. So we never got to finish the attic labelling, so the house is a bit of mess still.

James did manage to prepare the food though that was lovely and it’s been a great help him being here.

I’ve been very tired with my blood being low and I need to drink more. They are checking my U & A results again today as they were abnormal as I haven’t been drinking as much fluids, probably because I’ve spent so much time at the hospital and don’t get to drink as much as I do when I am at home.

So another long day at Chester today and should be out by about 3pm after two units of bloods, but at least I will have a bit more energy.

Back at Liverpool on Friday, but I have clinic on that day as well, so not sure when I will get out. Which leaves tomorrow (Thursday) to do things I need to do, that is if something else doesn’t go wrong with my plans. I have a new car now that I need to get to the garage to get a few jobs done, that was supposed to happen today! oh well!

Sunday, 22 January 2012

Welcome to all the new subscribers to my email newsletters that I have recently had, it’s good to have you on board.

I must mention Jules and Stuart Rubin, Stuart has subscribed and kindly sent me an email letting me know that it is Jules that has Multiple Myeloma and he is Just the carer. I think this shows how great these carers are, not realising how important they are to partners and the support they provide. I get to meet a lot of partners/carers at the oncology and I’ve noticed they all have the same things in common and that is how humble they are and just seem to get on with things. Without carers, both to help us physically and mentally, I’m not really sure what we would do.

At the moment, with me being on 40mg of Dexamethasone a day, my emotions are all screwed up and I’m having terrible mood swings, snapping at Charito for stupid things and then getting upset for no reason. It is hard for me to cope with, yet somehow Charito and I’m sure lots of other carers manage to look past all of this and still support us, even though I’m sure at times they feel like shouting back at us and giving up, I certainly wouldn’t blame them.

So are you just a carer …. Never let it be said, you are all wonderful people that deserve more praise and certainly could do with more financial assistance than you currently get to help the likes of myself and Jules. They put the time and effort in to make us all feel that bit better on a daily basis. So on behalf of all Cancer patients can I say a big thank you to all of you carers out there and never think that you are unappreciated, we may not say it at time due to our illness, but be assured you are all much loved.

Thursday, 19 January 2012

my uncle was diagnosed with grade III astrocytoma (glioma) in the right occipitotemporal region of the brain, following a solitary seizure attack in july 2009. the tumor was excised on 11 jan 2010 and histological reports revealed grade III astrocytoma. following the surgery, he was treated with IMRT radiation (novalis) and timazolamide. in jan 2011, the mri revealed contrast enhancement of a very small area in the surgical site. subsequent GHA scan also showed slight uptake in the same area. presently, we gave stereotactic radiotherapy (novalis) with effect from 3rd feb consisting of 5 cycles.on 17th july 2011, again an mri scan was done which showed a slight activity in the anterior aspect of the excised tumor cavity apart from the posterior activity already detected. We started him on avastin in October 2011 thinking the tumor may have progressed to GBM. He has responded well to 7 doses at the interval of 15 daysI was wondering if we could start him on DCA with avastin.thanks and regards

It was received from an anonymous person, so I apologise for not using your name. I’m hoping that you are just a little confused and I haven’t misled anyone in anyway. I am not a medical person is any shape or form, everything I have learned and posted on here is are either my own thoughts on subject or have been reposted from web sites that I used as a resource. I am not qualified to give advice on the subject of your uncle. Hopefully though someone who reads this blog is and maybe they can help you out with some advice. I’m happy for them to leave a message here for you so that you can monitor the comments and please keep us all up to date so I know that are thoughts are with you.

I would like to know of as many people as possible that are using DCA as I am thinking of using it myself. Dr Richard Orlowski has a Myeloma patient that I will be following to see how things go and keep everyone informed once I have an update.

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About

This site in general is about my life since I found out I had cancer. I found out I have a rare form of cancer called Myeloma and decided to create this blog to keep everyone informed. I am going to grow the site so that it covers other things as well and see where it goes.

As a quick overview, I've now had two Stem Cell Transplants/Bone Marrow Transplants. One with my own cells given back and one with a sibling donor.